Normal days?

[okiemom]

My husband is having a spinal tap on Thursday as the last step in ruling out anything else, leaving him with a diagnosis of PLS. He has days where he feels "normal" for awhile--able to walk without a cane and without much of a limp, minimal or no pain. Eventually, he returns to having the symptoms, but he thinks that fact that it can come and go at times should indicate he doesn't have PLS. Any suggestions? I told him that with all the researching I've done over the last few months, several neuromuscular diseases seem to have periods of symptom recession, but he's not convinced. He's really having a hard time accepting that this could be PLS because there's no test or one thing used to determine that as a diagnosis. Any help you could give would be great.

[hopingforcure]

I can tell you many people with UfMN problems can tell you that stiiffness and spasicity can change daily. The spinal tap is a good bet to look for anything else it could be. I hope they find something else, but if not, some good medicine for like zanaflex, baclofen, can help lessen bad days.. It is hard that test's do not confirm this dx. but hopefully in the future one will exsist. We will be here for ar ny questions, advice, welcoming, or the like. Maybe your husband will decide to come aboard, or have questions for you to ask.. Sometimes it just takes one side, the other side, or both sides to get the head around these mnd.s/

[olly]

hi okiemom.
yes,you can have good days when things seem a little better.
then sometimes theres more disabling times,spasms become severe but you can't work out why or what you have done to cause it.
during my years of testing for ms i was convinced it was this,i had definate relapsing and remmitting episodes.
as ms also effects grey matter/umn's i ofton think of pls as a primary form of ms.
my neuro said after finally ruling out ms before my dx that ms was more general and in my case it seemed more focal.
pls causes lesions in the grey matter but can not be seen on mri like lesions in white matter,i feel an acute umn lesion can cause sudden severity of symptoms.
over the years i have learnt(ofton the hard way)just to take each day as it comes.

[Just J]

Okie, my husband has not had any remitting moments. He feels a bit better in the morning but it is very short lived. He gets progressively worse throughout the day and is normally in bed for the night by 7:30pm. Each day is always a touch worse than the day before.

[Connie]

Everyone's experience with PLS is different and unique. My husband has some days when he is better than others and he does have to take an afternoon nap each day but his disease progression is slow and he doesn't deteriorate on a daily basis.

As trite as it sounds, attitude is everything and we have to try and focus on the positive. We are lucky to be alive and generally, with PLS, we have more longevity than a person with ALS. When my husband was diagnosed with PLS at an ALS clinic, the doctor told us we should go celebrate because he didn't have ALS as he was told he did by another doctor.

I am not saying that everything is rosy, it has helped me to get through my depression by not looking back and being thankful for all the good things in our life.

[Zaphoon]

Okie,

Mornings are tough on me. Sometimes I get better as the day wears on and other days fatigue sets in. My stiffness and cramping is with me daily but will vary in intesnity. Sleeping gets tough at times due to stiffness, cramping and sore shoulders.

I have been advised against prescriptions for symptoms as some meds may make me weaker. I'm still trying to work a full work weak so anything that may cause additional weakness is out of the picture for me.

Zaphoon
DDX = PLS

[jennibf]

Having finally gotten the completely unexpected diagnosis (at this point) of PLS today, I can tell you every single day is different for me. But yes, attitude has so much to do with it! I had two weeks that were horrible not long ago but then finally, out of the blue, I feel a bit better...well, until I suddenly fall :sad: but that doesn't happen too often as I have found a way to walk that helps eliminate it.

Like Zap, my shoulders hurt (as does my neck) a lot of the time.